She Knows: Mom Bolsters Other Parents

Raising Son With Rare Affliction, She Shares Her Understanding

May 20, 1991|By Dianne Williams Hayes

A small night light illuminates Susan Eisele's body as she lies on the floor next to her son's bed. She sleeps there every night to keep her son from wandering.

Nine-year-old Douglas suffers from Angelman syndrome, a condition characterized by severe retardation, an inability to speak, seizures and sleep disorders. He is one of only 300 known cases in the United States and Europe.

The 4-foot, 100-pound student at Central Special Education Schoolin Edgewater is in bed each night by 9 p.m., dozing off to the constant vibration of the humidifier in his room. But after two hours of deep sleep, he is awake again.

Throughout the night, his mother works to keep Douglas in bed.

With patience and time, she hopes to move her sleeping quarters into the hallway of her Crownsville home, then eventually back to her own bed. But Eisele considers it progress to have gotten this far -- especially given the obstacles and lack of information she's had to overcome throughout her son's life.

Doctors did not diagnose Douglas as developmentally delayed until he was 9months old. And school officials were painfully slow to realize the seriousness of his problem.

"I was told only that he was mild to moderately retarded," his mother, a 36-year-old accountant, says. "Then later, moderately to severe. It was not until I put together information that I finally said, 'Let's get serious here, this child is profoundly and severely retarded,' and they said 'yes.' "

She doesn'tblame anyone. She understands the difficulty -- both for the parent and the school system -- of dealing with children who require specialeducation. That understanding is invaluable in her job as a parent educator at the Board of Education's Parent/Educator Resource Center at the Carver Staff Development Center in Crofton.

Before the resource center existed, Eisele had written Director of Special Education Irene Paonessa asking why the county did not have such a facility. Unknown to Eisele, the center was already being planned. When it openedthis school year, she was hired and reduced her accounting workload.

"It was serendipity," Eisele says in her typically fast-paced manner. "They had been planning to do something and had received a grantfrom the state. I enjoy reading everything I can about special education, and what's more, I get a small salary to do what I was already doing on my spare time."

The future of the resource center, which began with an $8,000 state grant, remains in doubt -- particularly since state funding is guaranteed for only two more years, and the county has yet to agree to pick up the cost after that.

From Wednesdaythrough June 12, Eisele will be teaching a course to help parents whose children are moving from special education classrooms to the workforce. Twice this year, she and resource teacher Nancy Andrews have conducted another class, "Mastering the Special Education Maze."

Sitting behind a small desk at the center, in a room she shares with several resource teachers, Eisele has at her fingertips a telephone, computer and an abundance of information.

"It's real important for parents to know they have a say in their child's education, and they can have input," she says.

The center's progress can only be helped by Eisele's willingness to share personal experiences about her son. A broad smile flashes across her face at the mention of his name.

"Douglas loves everything and everybody," Eisele says. "He has an infectious laugh, the type that gets everybody laughing even at those inappropriate times.

"I take him everywhere, to church, the supermarket, and have bought numerous fruits that he decided to take a biteout of. And it's, 'Oops, we just bought that.' He's like a bull in achina shop."

In conversations with parents, she uses his progressto offer encouragement. Dressed in a conservative gray suit, she squats to illustrate the stubborn position her son adopts on days he refuses to ride his school bus. And she explains how she resolved the problem by retracing events that led to his protests.

During March, not more than 10 parents attended the two classes on "Understanding the Special Education Maze" which focuses on understanding parental rights and working with the school system's staff. Eisele hopes more parents will take advantage of the free courses offered at the center and learn to empower themselves.

"I used to be intimidated," she says. "Now I march into my son's meetings with my steno pad and a list of questions and items that I want to accomplish."

That resolve explains why she has been so willing to take matters into her own handswhere Douglas is concerned. Using her medical insurance, she placed Douglas in the Kennedy Institute's Behavior Intervention Program for three months to help control his aggressive behavior.

Eisele feared his rough hugs and sharp pushes would force the school board to place him in a residential program -- possibly at an institution outsidethe state.